Where to start?

[BigRob]

Hello everyone,

Following on from my introduction thread I thought i would post here to ask about getting assessed and finding out if I really do have Dyspraxia, or something similar or if I am just really that clumsy and forgetfull.

My GP is very nice, very helpful and very keen but admits he has no idea who to refer me to when it comes to getting tested. Since its "all done in schools" he was going to ring round and talk to his collegues to find out if he can send me somewhere. I have heard people bounce the words "Mental Health Team", "Neurology" and "OT and Physio" about so I was wondering, anyone here who has been sucessfully diagnosed as an adult who is not in employment or full time education, on the NHS, How did you do it?

Thankyou

[babooshka2002]

I did it by asking my GP to refer me to a neurologist. I did this on the advice of a friend's parents who had worked in the fields of OT and clinical psychology. My GP didn't have any idea of what to do with me either, and when I suggested a neurologist he jumped at the chance to do something.

I was lucky with my neurologist, I think. He very carefully went through my huge medical file with a fine-toothed comb picking out all the problems that I had been recognised as having previously. I was in the position of being a person who had always had significant problems in many areas and had had some of those problems recognised as individual issues, but not all my issues had been looked at (cognitive function had not, for eg, which is the thing that most gives me trouble these days) and nobody had put it all together before. I don't know if that is your situation or not - whether you have been recognised as a child as being clumsy, for eg.

[BigRob]

According to my other GP who handles these kind of things at the practice, I cannot be treated on the NHS and the last person she referred about dyspraxia resulted in a rude letter from the hospital asking her not to waste thier time, so I will have to go private if I want anything......

[babooshka2002]

Perhaps the word 'dyspraxia' is a bit of a curse. My neurologist would not use the word. - he insisted it was a symptom and not a condition. He was wrong, at least in part - dyspraxia can be a symptom, occurring as a result of something else, but developmental dyspraxia IS a condition.

Perhaps, instead of using the word dyspraxia, say that you are really clumsy and forgetful and would like to know why. If it is affecting your life in a very negative way, say so. In me, my condition of whatever it is has contributed to very severe depression, and whatever I have is a serious enough issue that it would significantly affect any job I wanted to do.

When I asked for a referral to be assessed for dyspraxia I got nowhere at all. "We don't normally diagnose adults" was what I got, that and the assertion by GPs that I wasn't that bad as i was clearly intelligent and verbally articulate. Eventually, I asked a much more sympathetic GP, but I also changed my method of asking. I said that it was really distressing to not know what was wrong with me and almost certainly was contributing to my ongoing long-term depressive struggles, I said that I would like to claim DLA - several people had told me I should - but I had no evidence, no medical evidence to present to them, that when I eventually went into a job I would really need something in order that they could make reasonable adjustments to my special needs, and the same for education. I told him that it seemed I really had issues with short term memory, visual processing and organisation, stressing that it wasn't just a clumsiness thing. I said I really wasn't able to cope and felt so overwhelmed by this and please could he help me because I really couldn't bear it any more. I then told him that my friends' parents had suggested the neurologist as a first step to rule out head injuries as a cause.

My GP wrote to the neuro. He told me that the neuro might write back to him saying he couldn't help and if that turned out to be the case then I would probably have to see someone in the next PCT over, in Leeds.

The neuro was where it all kicked off, because he looked through everything. Through him, I had an MRI scan, which he expected to be normal (it was), a referral to occupational therapy and a recommendation that I see a psychiatrist to discuss my symptoms which are not unlike ADHD (predominantly inattentive type). Through the occupational therapist I got a referral to neuropsychology, whic is apparently where they will test my executive brain function.

If you fit every single symptom on these websites, it doesn't mean you have dyspraxia, by the way. I think the reason that some people in the medical profession are so down on using the word is that the medical definition of dyspraxia is very specific. The symptoms listed on the websites could be symptoms of dyspraxia, ADHD, and even cerebral palsy or some other type of brain damage.

I would go for symptoms. Don't go for names, not yet. From my experience, it seems that thinking about your symptoms and how they affect you is better than naming the condition, even though I know how important names are and I'm slightly mournful myself about not having a nice, neat, handy little name that I can tell people so I don't get accused of laziness or not trying hard enough.

[Lou]

Wow, I think we had it easy after reading this thread! I strongly suspected my boyf was dyspraxic after online research and buying a book, so we went to his GP and said we suspected he was dyspraxic not just dyslexic, and listed the reasons why. He asked what he hoped the outcome would be, and my boyf said he just wanted the diagnosis, to know for sure, and this is where I came in useful! I said he wanted cognitive behaviour therapy (CBT) and some kind of life coaching. The GP warned us that because of the cuts there may be a wait and the support may not be that good, but he would write for an assessment.

A few weeks later the assessment letter came through, with an assessment appointment for 6 weeks time. The assessment was 2 weeks ago and he was diagnosed. The assessor said she would put him on the list for CBT and make sure he got put near the top as the waiting list if long, and my boyf has to see the GP again and ask for an occupational therapist, which may or may not be available in our area. He has an appointment to go back in 2 months so they can see how he's getting on. I have been VERY impressed by this, especially as we're in Hackney which has a poor reputation for such services. I would print this http://www.dyspraxiafoundation.org.uk/services/ad_symptoms.php and highlight your symptoms, then take it along to your GP and ask for an assessment referral. My boyf is 31 so it's never too late, go for it, and take someone along for support if you can. Good luck!